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MitoAction Blog

by GingerD
Join us on Friday, Oct. 7 at noon EDT (9 a.m. PST) as Dr. Darius Adams, a clinical geneticist, discusses molecular diagostic testing for mitochondrial disorders.Dr. Adams, Medical Director of the Goryeb Children’s Hospital Genetics and Metabolism Division in addition to the Personalized Genomic Medicine Program at Atlantic Health System in Morristown, NJ, will explore gene testing and discuss the rationale for using it as first-line testing.
Sep 29, 2016 Comments: 0
by GingerD
Join us on Friday, Aug. 5 at noon EDT as patient advocate Kristi Wees discusses medical homes for Mito patients.Topics include:
Jul 25, 2016 Comments: 0
by GingerD

After Jessica Gemayel lost her battle with mitochondrial disease a few months ago, her friends gathered to figure out what they could do in her memory.

Courtney Brown, Jessica’s best friend since middle school, and the rest of their gang decided to form Team Jess for the MitoAction Energy Walk & 5K presented by Stealth BioTherapeutics on Sunday, Sept. 18.

Jun 17, 2016 Comments: 0
by GingerD
Mitochondrial disease part of curriculum for Long Branch, NJ, seventh-graders

The seventh-graders at Long Branch (NJ) Middle School know about mitochondrial disease thanks to a creative teacher.

May 19, 2016 Comments: 0
by GingerD

 What does quality of life mean to you?

One challenge when creating clinical trials for people with mitochondrial disease is the tremendous diversity that exists in our community. Even patients with the same genetic diagnosis may have different symptoms and varying degrees of severity.

May 09, 2016 Comments: 0
by GingerD

Lincoln Ogonowski’s mitochondrial disease limits his mobility, so big brother Luke Krumich will often play with Lincoln’s toys for him. “I know what he likes and what he thinks is funny,” Luke said.

Lincoln is 3 years old and has Leigh’s syndrome, a devastating form of mitochondrial disease. Luke, 12, is his protective, loving, awesome older brother. The sons of Dyna and Rob Danger of Freehold, NJ, are as close as brothers can be.

Apr 18, 2016 Comments: 0
by Christine Cox

Please join us on Wednesday, April 20 for the next installment of the MitoAction Advocacy Podcast Series. 

Apr 13, 2016 Comments: 0
by GingerD
Join us Friday, April 1, 2016 at Noon (EST)/9 a.m. (PST) as Dr. Amy Goldstein provides an update on the Mitochondrial Medicine Society.Areas of discussion include: Transplantation in Mito patientsStroke protocol for MELASStandards of care for Mito patientsCenters of Excellence and the need for community involvement/input

 

Mar 28, 2016 Comments: 0
by Christine Cox

As patients or caregivers, it is frightening to think about what would happen if we could not advocate for ourselves.  Fortunately, there are legal documents that can be used to communicate our wishes under such circumstances.  This type of legal preparation is called incapacity planning and guardianship.  

Mar 18, 2016 Comments: 0
by GingerD

Double H Ranch is a camp for children who are dealing with serious illnesses. Thanks to the camp’s amazing medical staff, Double H gives children who cannot attend conventional sleep-away camps due to medical issues a chance to go away, have fun, and be just like any other child. Just ask Susan and Mike Nadrich and their daughters, Madeline and Tyler.

“It’s one of the most amazing places. It’s magical,” said the East Amherst, NY mom.

Mar 14, 2016 Comments: 0

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